Kindle Thoughts – Part 2

Kindle Features

Search

The best feature, IMO, of ebooks is the ability to search text to find what you’re looking for quickly and easily. Kindle not only lets you search the book, but also your notes. Pretty handy. Maybe not as much for a piece of fiction, but when you’re reading books for school or work, this is an awesome feature.

Readability Features

Kindle allows you to change the way you see the text on the screen. There are settings for brightness, text size, background color, font, margins, spacing and alignment. One of the things I like about Kindle is that I can read it outside without getting a glare from the sun. As I tend to not want to turn pages every 10 seconds, I opt for smaller print and wider margins. One of the features in this section is background color. Kindle gives you white, black, sepia and green. Black is great for reading in the dark – on an airplane, for example. Sepia is a teeny bit easier on my eyes than white, but that’s also with the brightness turned way up, which eats battery. Caveat emptor. I also have a Barnes & Noble Nook app, but use it far less than I do the Kindle. One of the things I really liked about the Nook was the background color called butter. The latest version of the app doesn’t have that color. Shame.

Notes and Highlights

Notes and highlights are handy when reading ebooks. I hadn’t really thought of doing either when reading fiction, but sometimes I find a phrase or concept I want to remember for later. Highlighting that text in the book allows me to hang onto that note. As long as I own the book and don’t want to remove it from my library, I’m good.

I can retrieve these notes in the device, the apps or via the web, and email them to myself, or anyone else, directly from the device or the apps.

When you email them from the Android App, you’re given the choice of style to format the notes. If you’re working on a research paper, the format of these notes might be important. In looking for the nuances in style, I found the Citation Machine website, which not only explains the styles, but will also check your paper for grammatical mistakes and plagiarism for a fee. In today’s collegiate climate where plagiarism is rampant, I’d probably buy such a service to ensure that my paper was correctly cited and didn’t get me kicked out of school for missing anything.

Note: There are sometimes updates to ebooks in your account. If you’ve read the book and have taken notes, made bookmarks or highlighted text, all of this information will be deleted when the book is updated. If you want to keep the notes and update the book, I’d recommend shipping yourself a copy of the notes before you do the update so that you have them.

Recommendations

In the Kindle Apps, the next function is to recommend the book you’re reading from inside the book. Of the choices given, it’s interesting, if not a bit odd, that Goodreads is missing from the list.

X-Ray

This is a feature I don’t really use. It’s a reference tool that allows you to access information about a book that’s been pre-loaded with the book so that you don’t have to be online to use it. Things like Wikipedia articles, information about people/characters, definitions and a picture of the cover. It’s also possible, through X-Ray, to translate text or listen to music files you’ve transferred to the device.

Flashcard Decks

Another feature I’ve not really used, but I could see it being really helpful if you were reading a textbook on Kindle.

Bookmarks

These are the same bookmarks you’d use to find your place in a print book.

Kindle Reading App

The Kindle App was updated while I was thinking about what to put in this post.

The bottom bar is the most significant change, IMO.

Updates to Kindle app 10/17 https://www.digitaltrends.com/mobile/amazon-kindle-app-redesign/

Official Amazon Apps

There are currently 25 official Amazon Apps in the Google Play Store. I use apps for shopping, games, Kindle, Audible, Music, Video and Drive (cloud storage) on my tablet and phone. I use Kindle, Audible and Drive on my laptops. Every time you install one of these apps on your phone, tablet or computer, there is a connection created in the Amazon Devices List. Amazon numbers these devices, so if you don’t realize this and you go off and install these apps on all of your devices, pretty soon you won’t know what’s what. And… the descriptions aren’t always clear enough for you to know which one is for the shopping app and which one is for something else like the Kindle app. Isn’t that groovy?

It’s not the worst thing in the world to have to go and deregister all of them and start over so that you can rename them as you add them. It’s not necessary to do so, either. If you choose to do so, and depending on how many you have (I now have 14 total in my list), it’s just time consuming and I have better things to do with my time.

Kindle App for Android

I started reading books on my tablet app long before I bought an actual Kindle. For the most part, the apps are great for reading. There are a few features missing, and I get why Amazon left them out of the mobile apps. These features aren’t the main reason I bought a Kindle, though. I decided to try one because reading on my tablet was burning my eyes out of my head.

App Features that are Different from the Device

  1. Notes and Highlights. You can highlight portions of text and take notes while reading in the mobile and desktop apps. Exporting them is different in all three.
    1. Android App: Tap the Notebook icon on the top menu. Tap the share icon at the top right of the page. Choose Export Notebook at the bottom left of the page. A dialog will open titled, “Export All Items from Notebook.” It is followed by 4 radio buttons for the style to apply to the notes.
      1. APA Style – this is a style developed by the American Psychological Association for academic institutions. There are two types of citations: in-text (or parenthetical citations) and complete reference citations.
      2. Chicago Style – The Chicago Manual of Style uses 1). Notes and Bibliography and 2). Author-Date to notate a paper or book.
      3. MLA Style – The Modern Language Association is an organization that was created to develop guidelines on everything language and literature related.
      4. None (No style) –
    2. Desktop App (Windows): On the left menu, there is a Notebook icon similar to the one in the Android App. Once you click the icon, you’ll get a dialog telling you that you have noted x% of the document’s allowed notes, which is set by the publisher.

 

 

 

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Cisplatin – Week 2

July 25, 2018

Today was a long-assed day. I started with a 6 hour infusion of Cisplatin downtown in the Infusion Center. I had called in yesterday about the feeling that either the anti-nausea meds or something was messing with my blood sugar. My oncologist was on vacation this week, so I got to see her PA. We’d met last week and went back over the few things that were going on that had already resolved, and then talked through these new things. She suggested that if I’m able to drink a gallon of water a day, I should replace at least 2 pints of that fluid with something that has electrolytes in it, like juice, Gatorade, or milk. Cisplatin also burns through calcium, potassium and magnesium, so I need to make sure I’m replacing those, too. When she pulled up my blood work from yesterday, my blood sugar was 93, and that was after eating something on the way there. That number might be normal for a fasting blood sugar, which it wasn’t. So now, I’ll have to work on eating a lot more often. I feel like I’m doing more grazing at this point.

When I get the Cisplatin, they have to give me 2 liters of fluid and I have to pee at least 500 cc of fluid before they can give me the chemo. Today, I had already drunk a quart and a half of water before getting the fluids, so when it was time to pee, I gave them 800 cc back. Always the overachiever!

I was able to get some work done today from the OIC, which was nice. The wifi sucks, but it stayed more or less connected the whole time. Today, I also had an appointment with a dietitian. I’d requested one a few weeks back when I started dropping weight like crazy. I have a family history of anemia on one side and diabetes on the other, and once I get rid of this cancer, I don’t really want it back, so I’m going to do a lot better job of eating better and taking better care of me. The dietitian was really helpful. I learned that women over 50 generally need a lot more protein in their diets to start with, and I need 2-3 times that because of chemo and radiation. She’d had me fill out a diet diary. We both had a little laugh when she asked me about the 2.8 oz of Raisin Bran Crunch. She didn’t realize they sold serving size containers at the store. She gave me a chart and we brainstormed some different snacks to help keep my blood sugar even throughout the next 4 weeks of this chemo.

I got finished around 2:30 and somehow managed to get up to my radiation appointment a little earlier than expected, which was good. They were able to get me in and get done early, too. By the time I got home, I was starving. I knew I needed to eat something decent at home because I was heading out to a vendor-sponsored event at the Mariner’s game and had no idea what they’d have in the box, so I had a couple of pieces of grilled pork chop and some salad before I left the house.

When I got to the game, there were the usual snacky things, beer, more beer and soda. They had gotten some fancy water for the suite, so I went out to the bar and asked for just a regular bottle of water. They didn’t have any. Right? I know. So… the bartender gave me a glass from the tap, which was fine. We eventually got a case of water for the suite, but I thought that was weird. It was hotter than I expected and I wish I’d have put my short-sleeved shirt on, but I managed to stay comfortable the duration of the game. I finally started getting tired around the 7th inning. I bailed during the 8th so I could beat some of the traffic home. I listened to the game on the radio on the way home. They lost by 1 just as I was getting off the exit. We’re still only a couple of games out of 1st place behind the Astros.

For the record, if Seattle and Houston go to the World Series I’m gonna lose my shit. Sorry, Mariners. unless you’re winning, I’m cheering for my ‘Stros. Same goes when we play the Twins. ¯\_(ツ)_/¯

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Cisplatin – Week 1

July 19, 2018

I started on a new weekly chemo today. It’s a platinum-based radiosensitizer called Cisplatin. It’s got some tough side effects. I’m hoping that because I’m on a lower dose, the side effects are less as well. I already have chemo brain and peripheral neuropathy, and I would prefer neither got worse. This chemo will require me to stay really hydrated, which may be difficult, but I’m going to do all I can because I don’t want kidney issues out of this, either. With this one, I go back to taking daily steroids and anti-nausea meds. I have to take the Zofran every 6 hours and the other 2 every 12. Today, I drank about a gallon of water in addition to the 2 liters they gave me in the IV. I’ve already lost count of the times I’ve peed today. LOL

July 20, 2018

I went back in for my Herceptin and Perjeta infusions, which I get every 3 weeks. There is something about the processing of the orders that the Medical Oncologist decided would be easier if the Cisplatin orders were done as separate “paper” orders. The nurse today told me that it probably sucks for me, but it was really helpful for them to do it that way. They’re going to see if they can add the Herceptin/Perjeta infusions to the scheduled Cisplatin days to help save me time sitting there multiple days. That’s pretty nice.

First day of Cisplatin went pretty well. I am waking up in the middle of the night to go to the bathroom again. As the nurse said, it ends up being about the time to take the Zofran, so I did that. I was up most of the night for some reason. It’s been an anxious week, and I am trying to work, so two factors right there. They also advise taking the Zofran as soon as I wake up to “set the tone of the day.” Apparently, a lot of people wake up feeling nauseated and dizzy on this chemo. I haven’t had that effect, but I’ve also only had 1 dose, so the next one will be more telling.

I was able to eat and drink today without any issues. I didn’t quite make a gallon of fluids, but it was close. I like to keep my water/drinks mostly in containers that are easy to count, like quart or liter sized bottles. As long as I can get 3-4 of those in during a day, I’m good. I had the first radiation treatment following the cisplatin today, too. I didn’t notice any real significant changes. The nurse there asked if I was scheduled for mid-week fluids. I’m not yet. Hoping I don’t need to. She also said that she’s heard the 4th day after stopping the anti-nausea and steroid medications is rough with cisplatin. One day at a time.

I was able to enjoy a night out with friends tonight, too. We had some tacos and fruit. I got to spend some time with the mutts and the little one. Like my nephew at her age, she likes to get scared when you sneak around the corner and say “Boo!” She’s a smart cookie – knows all her letters and numbers. She’s got a little tablet that she walks around with and plays little educational games and videos. We play Strawberry Shortcake sometimes. I love hanging out with her and the muttses.

July 21, 2018

I woke up thinking I needed to be on a conference call – it was showing up in my phone calendar. I did some of my usual Saturday morning reading before getting up and starting the day. I woke up hungry and craving French Toast.  I don’t have bread so I started thinking about whether I could get out and grab something and get back before my call. I decided to wait til the call was done and then see where I was at hunger-wise.I also woke up with a scratchy throat. I think this is more from being overtired and probably snoring a lot of last night because I was overtired.  I got up and took my meds, headed down to the computer to discover that there wasn’t a call – I hadn’t cleared the reminder from yesterday. So… I started doing some of the work I said I’d do anyway and decided to use Door Dash to bring me some French Toast. There were a couple of decent enough options, so I tried a place I’ve been meaning to try for a while and ordered breakfast. It was decent enough. It came with eggs, hash browns and 3 kinds of meat. I need the extra protein so it was a good option. When I finished eating, I went to work on some documentation for work. It was nice to be able to do something productive, and to get some hours in because all the various appointments are eating my lunch a bit. I watched some old Star Trek and Big Bang Theory before going to bed. I know. Boring.

July 22, 2018

I spent a lazy day on the couch today, and I needed it. I worked about 6 hours yesterday on some documentation. That was pretty tiring. Around dinner time I decided I should get a few things done, maybe go for a walk and get the mail, stuff like that. About that time, I started feeling like my blood sugar was tanking. I made some food first  – I’d found some boneless pork ribs and so I just tossed them on the broiler to get them done fast. They turned out pretty good. After I ate, I took another short nap, and then my digestive system went to war with me. I had an inkling this might happen. The new chemo can cause both constipation and diarrhea. Apparently at the same time. Yay. Thankfully, after I got whatever out of my system, I felt pretty good.

July 23, 2018

I was hungry when I woke up this morning. Kind of a low blood sugar hungry, so I had some melon before I headed off to radiation. When I was finished, I went and got an Egg McMuffin. I felt okay for a while and then felt like I needed to find something to eat again about an hour later. When I get chemo, I’m given a steroid and anti-nausea meds that I need to take for 3 days after the infusion. This being my first infusion of Cisplatin, I don’t feel like I really needed them, but I took them anyway because I’m supposed to and in case I was going to have a problem. Thankfully, I didn’t have any issues other than this feeling that my blood sugar is low.  I’m not sure if it’s the Reglan, the Cisplatin or if my sugar actually is low from one of these drugs. Thankfully, it didn’t affect my ability to eat and drink, and I got in somewhere around 5 or 6 quarts of water in today when all was said and done. I also went in and got the blood work for my next infusion tomorrow done at one of the other clinics. We’ll find out, hopefully, whether it’s my sugar or the drugs tomorrow when I get infusion #2.

 

 

 

 

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Back at Work – For a While At Least

I mentioned earlier that the Radiation Oncologist suggested that I go back to work for a while because the effects of radiation won’t affect me til the end of treatment. So… I went back to work full time about a month ago.

I’ve still had a ton of appointments and am burning through my PTO faster than I’m earning it. I am still trying to work at least 6 hours a day. When I’ve got even half days of appointments, that’s more than I can do. Even on days that I don’t have a ton of other appointments and stuff going on, it’s still hard to get even a 6 hour day in, and that’s depressing. I’m trying to accept this and feel lucky that I am able to work at all. A lot of other people still wouldn’t be able to be back at work yet 2 months post-op much less dealing with the after effects of chemo treatments.

I’ve got a couple of internal projects I’m working on. Everyone is really awesome and understands my need for flexibility. One of the good things about being back at work and in the office a little bit is that it gets me out of my head some. I have things to do that take up my time and are useful to someone. I’d missed feeling useful. Unfortunately, with cisplatin, I’m going to have to be really aware of being around people again for the next 6-8 weeks. Being in the office won’t be a great place for me to be, which will suck, because that’s where I can be on the company network and the stuff I am working on gets done faster when I’m there.

What I’m still struggling with is feeling guilty for not being able to stay focused and get 8+ hours of work done like I used to. I know this will change and it’s all “fine” right now, but I want to get back to having a routine that I can count on. I want others to know they can still count on me, and I just can’t make those commitments at this point. And yes, I know no one goes to their deathbed wishing they’d have been able to work more. Unfortunately, this is the means to an end. I need to be able to pay the rent and my other bills, and have insurance and all that, and make an effort to have something extra at the end so I can travel a little and do other things. That’s hard to do when you can’t work or are on limited hours like for a disability leave. This country’s policies really suck in this regard.

So… I’m doing what I can one step and one day at a time. It’s all I can do.

 

 

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Feeling Robbed

Mid-July

I’ve been thinking more lately about the fact that while my grandparents mostly lived into their 90s, I won’t. I will be lucky to live into my 70s, which is the age my parents are now and still going strong. I knew this when I started this journey. Within the space of 5 minutes, that all changed, and it’s taken my breath away.

It’s hard to think of all the things I won’t be able to do because the probability of me surviving this for more than 5 years just dropped to around 22%. It makes me feel like all the treatment I’ve gotten through so far was for naught. All isn’t lost yet, but it’s really hard to pull myself up from this dark place of fear.

I don’t know what to feel yet, really. My stomach’s been in a knot for 2 days already. What little of my life that I’ve actually lived so far has flashed before my eyes. There are no answers to the whys of what’s happening in my body. We just know that this cancer is not going to just behave. Some would point out that this is who I am. I don’t just behave because someone tells me to, either.

My medical team tells me I’m in uncharted waters. Stage IV is where they call cancer incurable. The new node they found in the PET in July knocked me up a notch instead of down. In the space of 5 minutes, I went from Stage II to Stage IV. Reality is that this was probably already metastatic when I got diagnosed in October. They can try to manage it but it will eventually kill me. The big question is what the definition of eventually will be. It isn’t what I thought it would be a week ago. There aren’t enough people whose cancer behaves this way, or people who had similar metastases where their treatment plans were proven to work over time to know which path to take. There are a couple of options on the table today. I need to think about and work at getting a 2nd opinion. I need to work harder at getting my affairs in order.

A week ago, I was starting to plan the things I’d be doing when I finished radiation and was on the mend again. I wanted to buy a new camera and do some traveling. I was thinking about dating again. I’ve spent enough time grieving the fact that I’ve had to do so much of this alone. I have focused on the good qualities of my ex way too much in the past couple of months, wishing I had that back in my life. The good stuff, not him specifically.

If where we are today is where I think this is headed, finding that special someone is pretty much out. It would be patently unfair to ask someone to stand by and watch me die. I know that I couldn’t do that in a romantic relationship. I’d never be able to give all of myself to that person freely. It wouldn’t be right to ask someone else to do more than that. This is all philosophical at this point. I need to get through the next phase of treatment and see how things go before I throw the baby out with the bath water.

While basically coasting through my chemo, I wondered when the other shoe would drop. It seems that it finally has, and I’m scared. I’m most afraid that I won’t ever be able to be done with treatments and procedures so that I can enjoy whatever time I have left without being exhausted or unable to move. I’m trying not to get too far down the rabbit hole of despair. There are a few patients my doctors have seen where the disease progressed similarly, and the treatment they’re thinking of using on me worked on them, and they’re still disease free almost 2 years later. This makes me feel somewhat hopeful.

I have to stay focused on the coming weeks. How will the next parts of the treatment plan affect me, and what happens if they fail? How will I know? This is the hoping for the best and planning for the worst part of the program. I started to do some of this planning 4 years ago, and then again when I got diagnosed. I put it aside because I needed time to think through some of my decisions about my stuff. Thinking about end of life when you’re still thinking about how you’re going to get through the day and onto tomorrow is just too much of a continental shift to do both at the same time. But there are questions I need to ask myself and hopefully find honest answers. How long will I be able to work and have insurance? What is my plan if I can’t? What steps do I need to take now to plan for my end of my life.

Last night, or more accurately, this morning, I was dreaming that I was back at the offices where I had one of my first real jobs out of college. It wasn’t the same place, but I knew where I was. They had built a new building with a courtyard of businesses where you could get something to eat or run errands on lunch hours. I was staying in a room in the office that was like a hotel room. Another woman was sleeping in a conference room with a big glass window/door. She was on crutches, and I was told the window was so people would now when to go to help her. Everyone there knew I had cancer and that I didn’t have a terribly long time to live. There were some familiar faces that broke into broad smiles when they saw me and enveloped me into hugs, telling me I would be okay and they were happy I could make it for a visit. There were many women there who’d had surgeries and were being wheeled about, or they were getting ready for tests and procedures. They asked if I would sit with them while they had their scans. They wanted me by their sides. It was the first time in 2 days that I’d felt my stomach relax.

It’s not over yet. There are still treatments to be done. I will have to get through the coming days, maybe sometimes hour by hour, and gradually back to day by day and then week to week. It will take time. I have to have the patience and faith that all will work out for the best. Just like all those people in my dream telling me that it will all be okay.

 

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Endoscopy Results

July 6, 2018

After the PET last week, the oncologists got together with the radiologists, pulmonologists (lung docs) and gastroenterologists (gut docs) to talk about my “new” area of concern. It was decided that rather than do a bronchoscope, it would be easier to access the area by doing an endoscopy with ultrasound.

Today, I went in for the approximately 30 minute procedure. After a rather lengthy conversation with the anesthesiologist, I opted to be sedated with propofol rather than general anesthesia. I’m tired of waking up in a complete fog and staying that way for the rest of the day afterward. The other benefit to not having general anesthesia, in this case, is that they don’t have to put a tube in my airway and I don’t come out with the dry, scratchy throat like last time. This is another one of those quality of life choice things where cancer patients in particular, take the side effects to treatments of any kind as the de facto way things are supposed to be. Why suffer if you don’t have to?

When the procedure was done and I was nominally awake, the doctor came in and told me that the node was positive for metastatic cancer based on her experience and what she saw. She said she was sorry before leaving. I haven’t heard that in a while. I also hadn’t really taken in the gravity of what was behind those words.

I had a long appointment with the Radiation Oncologist this morning. She’s got the dosimetrist working on a new plan that incorporates the new node. The Medical Oncologist took my case back to the tumor board today. She is conferring with the other breast oncologist and also the SCCA community to see what they think the best options forward will be. The current thoughts are to add this area to the radiation plan, maybe add another chemo along with the radiation and nuke the whole thing and hope that takes care of it. The drawback would be finding that it had metastasized further in a few months time. The gravity of where I am now is settling in.

The question is why my body gave up on fighting this node. What made this one different that it grew while I was on 4 different types of chemo in the last 7 months? We won’t know until the cytopathology comes back if it’s got a different characteristic than the others or not. This wait is a hard one. Back in October, I knew the outcome would be that I had cancer. This time, I’m at the mercy of the lab and my medical team to figure out what’s going on and figure out the best way to treat it.

Stay tuned.

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The Decisions

July 11, 2018

In the past 2 weeks, there’s been a lot of conversation about what to do with the new node in the middle of my chest. The conversations, what they’ve told me of them, have been around whether it makes more sense to include this node in the radiation fields or if it makes more sense to go back to a systemic chemo approach.

The pathology of the biopsy came back late Monday, and it’s positive for metastatic breast cancer. It is also HER2+ which means that the characteristics of my cancer aren’t changing. That part is good but also concerning at the same time. This also isn’t a huge surprise. It’s better than finding out that it’s lymphoma, or lung cancer or a new primary cancer of some other kind. The concerning part is that this tumor started to grow while I was on chemo, and am still on the targeted chemo intended to eradicate it.

Lots of questions going through my head. What is going on here? What’s up with my immune system? Why isn’t my body fighting this off? Is my cancer already turning drug resistant?

The answers are mostly “we don’t know.” What they do know is that they’ve had a patient whose cancer did something similar and they tried an approach they’ve seen work with other cancers that they’re going to try.  So this node, along with the others in the immediate vicinity, will be added to my radiation plan. Then, starting next week, I will be getting a new, platinum based chemo. Cisplatin is what’s called a radiosensitizer. When it attaches to cancer cells, it makes them more sensitive to the radiation treatments. The hope is that we’ll be able to kill all of the microscopic cancer that’s left. The other patient they mentioned is almost 2 years out from her last radiation and she’s doing well. I am praying that this will work for me as well.

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